Accessing CIFASD Research Data
The CIFASD makes archived data available for discovery and validation research, with the ultimate goal of improving diagnoses, interventions, and treatment of FASD. Archived data from the previous three Phases of CIFASD vary in terms of population studied and outcome variables.
For more information on each Phase and the type of data that are available, please click on the appropriate cell within the Table below.
|Phase||Demographics||Dysmorphology||3D Facial Imaging||Neurobehavior||Genetic Data||Brain Volume||Infant Data||Cytokine Data|
|Phase 1 (2003-2007)
|Phase 2 (2007-2012)
|Phase 3 (2012-2017)
To request data, an application for data use must be submitted online via the CIFASD Data Access Request Form.
This application requires the investigator to provide information about the investigator and project, including:
- General information about the requesting investigator
- Investigator’s Biosketch
- Description of the proposed research project and how the data will be used (See the Research Strategy Form)
The CIFASD has a Data Access Committee that will review applications seeking access to archived data and ensure that data are appropriately disseminated. This includes assisting investigators in understanding the data which best matches their research objectives.
Frequently Asked Data Sharing Questions
Approval upon revision: Investigators will be informed of the concerns that would need to be addressed before the application could move forward. A revised application can be submitted and reviewed on a rolling basis.
Denial of the application: Investigators will be informed of the concerns that were noted by the committee. A new application can be submitted but will be reviewed at the next available review cycle.
CIFASD DAC reviewers assess the application considering the following questions:
Is there sufficient evidence supporting the likelihood of this study identifying novel findings, or of otherwise contributing important knowledge regarding etiology, pathogenesis, diagnosis, intervention, or treatment?
Is the project technically feasible, and if data are provided, will the research project provide robust and reproducible results?
Do the investigators sufficiently justify the use of the data?
Do the investigators have the expertise, personnel and institutional setting to achieve the goals of the proposal?
Is the data being requested reasonable and sufficiently powered to achieve statistical significance for hypotheses being tested?
Once approved, your approval is valid for 12 months.
The Qualified Investigator may renew the Data Access Request after one year as part of the brief annual report.
Yes, there are two types of letters of support that we can provide.If you complete an application and your request is approved by the CIFASD DAC, you can receive a letter that indicates you have been approved for data. This approval is valid for 12 months.
If you do not complete an application and/or your request is not approved, CIFASD can provide a letter of support that indicates a brief description of the available data and will state that before data will be distributed to you, you will need to have your application approved by the CIFASD DAC.
There are many different NIH approved data sites. These include but are not limited to:
The database of Genotypes and Phenotypes (dbGaP), https://www.ncbi.nlm.nih.gov/gap
The National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS), https://www.niagads.org
Laboratory of Neuro Imaging (LONI), http://www.loni.usc.edu
The National Alzheimer's Coordinating Center (NACC), https://www.alz.washington.edu